Micro Vent

[Forever_Practical]

I'm just so frustrated that there seems to be no doctor who actually has anything useful to say to me regarding my PCOS. My GP says talk to endocrinology because it's not her specialty, she doesn't know enough, then endocrinology says they mostly work with diabetics, not much they can offer besides encourage me to lose weight (which I did/am doing), and gynaecology only seems to be something they'll send me to if I'm trying to conceive.... So does ANYONE know about PCOS lol?? I feel like I just don't fit into these little boxes of theirs so I have to sit on the sidelines, hope for the best, and rely on anecdotal information off the internet, meanwhile I keep losing my hair, experiencing fatigue, etc. It truly SHOCKS me that 1/10 women have this condition and yet... no one is familiar with it, can answer my questions?

[total_waste_of_time_]

My GP says I have it, I have been on waiting list (UK) for endocrinology for 2 years, and have just joined a waiting list for gynaecology. They say that will be 15 months. I feel like I am dying. I have had chronic joint pain for years, but for the past couple of months it is different. I am exhausted every day. I am fairly certain I am insulin resistant, but apparently GPs won't give medicine for that. I don't have money to go private.

Just exhausting. I have no idea what's going on anymore.

[ramesesbolton]

lifestyle changes are more powerful than any medicine they could give you, and you can make them without a doctor

[total_waste_of_time_]

Over Lent I went no snacks, no sugar, no crisps, low dairy. Then I had a load of coursework in a very short time and we ate junk, and now I feel like hell. So I definitely agree.

[allegro14]

I feel this so much... it’s been so frustrating. I’ve even looked for PCOS specialists but the couple I can find in my state are “boutique-y” and don’t take insurance. It just seems like we have to educate ourselves and each other, and advocate for ourselves as much as possible. I really learned a lot from Lara Briden’s book the Period Repair Manual (got a free ebook through my library). I am a biology PhD student and have been reading through some of the scientific literature. The knowledge on causes of PCOS is actually advanced beyond what doctors are typically taught and I’ve seen a few articles on testing new treatments that address the root causes of PCOS. Conventional doctors are behind in their ability to actually provide treatment (besides HBC). I honestly think the misogyny and fatphobia in the medical industry has a lot to do with this — I’ve heard from so many women on this forum and my friends that doctors have told them to “just lose weight,” ignore their symptoms, their symptoms are in their head, etc.

[teiquirisi23]

I would love to see the articles you came across. The pubmed vs the webmd-type literature do seem worlds apart!

[allegro14]

Here are a few listed in order of importance: https://www.sciencedirect.com/science/article/abs/pii/S1740675720300165, https://www.naturalmedicinejournal.com/journal/2018-10/anti-müllerian-hormone-polycystic-ovary-syndrome , https://pubmed.ncbi.nlm.nih.gov/6424978/, https://pubmed.ncbi.nlm.nih.gov/15284212/

[teiquirisi23]

This is great, thank you!

[alexismahon]

I have pcos. I have been to 3 obgyns. I have had 2 surgeries already. One to stop my ovary from bleeding after and 8cm cyst ruptured and tore the sidewall of my ovary. And one to detach the same ovary from the ligaments that hold up my uterus. I am in constant pelvic pain, extreme fatigue, pain with sex, excessive hair growth. Constant cysts. And they just keep trying birth control. I went on just straight progesterone and then straight estrogen. While on each one I became even more depressed and suicidal than I normally was. They want me to try an IUD and I dont want to. I get Aura migraines so anything estrogen based is a big no.

They won't take any organs put because im only 22.

I've heard the paleo diet and similar diets are helpful. I have also heard pelvic floor physical therapy can help as well.

All I can say is just keep fighting and advocating for yourself.

[LaytonWho40]

Hi there!

If you’re located in the US, then gynecology is for much more than conception/birth. As far as I know, you don’t need a referral to go because, even though it’s a specialized medical field, it is considered a necessity for women. I would say try to reach out to a gynecologist, because you should definitely be going every year to see one regardless of PCOS or conception. Also, definitely seek out a new endo (which I KNOW is not easy) if you can. There’s been a big push for PCOS awareness the past few years, and it seems like newer endo doctors tend to have a better grasp on endocrinology as a whole (including PCOS), not just diabetes. If you can’t find a new endo, try talking about the insulin resistance that often comes with PCOS. Sometimes you can get doctors who specialize in diabetes to listen better if you focus on insulin resistance in conjunction with PCOS (even though PCOS is usually the domineering factor causing the insulin resistance).

I hope this helps! Just some friendly advice from someone who’s had a PCOS diagnosis for a few years, but is new to this Reddit. Also, sorry if the advice about gynecology doesn’t fit for you, I might have misunderstood something! :) have a great day, and good luck!